Diagnosis

Hi Susan

Thank you so so much . I just need to work out a diet plan and wether to take vitamins etc . So any advice I that would be so appreciated xxxc

I follow Paleo diet....sugar free, glutten free, low fat. you said you are menopausal...so am I and I use Estriol, called Ovestin which I insert into my vagina every night with an applicator, helps with vaginal dryness. 

I am only a month in to being diagnosed myself and its so upsetting i felt that my bvery woman hood was being taken away from me 😥

But have faith that as other ladies have  said LS is verg individual and with barriers and creams its very much what suits you 🤗

I am feeling better as i have changed my diet lactose and wheat free although struggling with sugars i have cut down hugely as i have moved and the sweets are awful here which is a bonus 😁

I use my bicarb spray every time i use the loo and have baths only once per week as a treat 😀

I am still using betnovate 3 times a day but after i moisturise with either coco nut oil or petroleum jelly . 

My aim is to find something natural to alternate with the coconut oil.

My main issue is having stains on clothes as panty liners are a no no.

Do not despair as i believe i have possibly had this for years as many ladies here also think that they have .

You will get through this and manage your LS stay strong we are all here for each other 😘😘😘  

Thank you Susan for your lovely response . It is just that your womanhood gone . I am on the steroid cream and am also trying olive e oil as recommended by die one on here . I am cutting out sugar but to be honest I  not a huge sugar aholic anyway , I bought gluten free bread today to try and cheese . I have only drunk goats milk for ages which is better for you anyway . I just think one thing st a time , I am vegetarian so you can’t cut it all out it what do you eat ? My passion is a glass of two of red wine not really sure where I stand with that , any advice gratefully received . I am just about to buy a spray bottle for my bicarbonate mix and have three books to plough through , if we have to live with it may as well make the best of it . It’s just such a shock and there are a lot of horror stories . Thank you , keep well on your own journey xxxx

Hi Jane, I remember a couple of people posting that after a glass of wine they flared...not sure whether it was just the wine but I thought I should mention it..sorry...maybe just have one glass instead of two ..its not easy cutting out stuff that we love.

Thank you I thought that may be the case . Is it normal to feel up and down , I am coming to terms that I have to live with it , then I think if all the awful photos and operations and I just crumble . I have an appointment with the gynaecologist on Monday so see what she says . Really down tonight xxx

Hi Jane, truthfully, I rarely think about LS unless I'm posting on this site.  Perhaps that's because I have had this for 5 years which is plenty of time to come to terms with it, and also because I rarely flare.  I think everyone has different circumstances.  What I can tell you though is that I have 5 auto immune diseases and I still bound out of bed most morning feeling cheery.. you have to remember that there are worse things!!  I cant remember if you are newly diagnosed, if so its definitely hard to accept at first.  I think its important to share how your feeling with your partner as keeping it to yourself doesnt help. 

One other thing, dont take everything that your doctor/gyno tells you as gospel truth as many of them mean well but dont really have any real experience with living with LS and so you will need to read as much as you can. (Big hugs) x

Jane, Just last week I read a science article that found that ONE glass of red wine for women and 2 for men was associated with a LONGER LIFE.  The article didn't say, but I'm assuming that ORGANIC red wine would be much healthier, especially for those of us who contend with any autoimmune disorder.  

Hi Caroline

Thank you for your kind words, feel tears springing again.   Where can I get hydramol ointment? also someone else said about vitamin D3, what is K supplement, I already have magnesium, it is just such a shock and I cannot believe the damage already done,  but then I cant remember the last time i really checked myself, other than we used to laugh about my curtains, and now they are gone, such a huge shock, my husband has been great, says its not the end of the world etc etc.  My sex life is not brilliant, but i would like to hold onto what we have.  Because of my anxiety I am just sat here shivering and yet I know i must calm down. My GP was brilliant, reading back through the comments I am going to look up Dr Goldsteins and watch the DVD, i have also ordered some books from Amazon, so going to give those a go. At the moment I cant see the wood for the trees, I assume that will be ok.  Most people on here have said dont google photos, most of them are from untreated cases and just live your life as you can.  I am really going to have to get my anxiety under control with this.  But I want to thank you for your wonderful support, at least i know i am not alone. xxxxx

Take one thing at the time, LS is hard work and affects you emotionally and physically.....the shrinking of parts of your anatomy is what LS does, it is called dystrophy, they will restore in time, maybe not fully.

You must do the treatment with steroid cream faithfully, ask your doctor to prescribe you a barrier cream or ointment you can use....stop using toilet paper and no baths.

Also you must begin using those cones to dilatate regularly .....Must come to terms with the illness. It does not help you to google for photos.....

Hi Jane 

Please don’t fret, easy for me to say but I was in the exact same state of shock when I was told two years ago. It can be managed. I am currently in remission simply by using olive oil 2-3 times a day, just smeared on my bits. I wash with hydromol (my dermatologist prescribed this but think you can buy it over the counter).  It can also be used for moisturising but if using olive oil then that will be enough as a moisturiser. I keep the hydromol in my washbasin drawer and rinse myself over the toilet with a little jug then use the hydromol, rinse again and pat dry. Then I gently apply the olive oil everywhere. It’s so soothing. I was prescribed steroid ointment to use but after starting with the oil on the 2nd March this year I found an improvement within a week. This has been so successful that at my last appointment my dermatologist wanted to know what I’d been doing! She made a note of everything I was doing and then said I could stop using the steroid altogether. I will see her again in September and if all is still clear she said I can be signed off. I am so happy with this and I seriously hope it might help you too. I have two friends with the same condition who are now trying it out and I’m over the moon to say they are seeing significant improvement as well. Any old olive oil will do from your larder or over the counter in a chemist. I also take Vit D3 just for my skin as I think it will have  thinned a little from using the steroid for a year. Good luck and please try not to stress or that will make things worse. 

Thank you Jill , I am going to start doing this . Obviously I have steroid cream as well as I only got it yesterday but I will start using the oil as well ,  it’s just one whopping shock and there are some real horror stories out there as well as some very graphic photos !!!!! Xx

I will give it a try to the olive oil myself, I can not stand coconut oil in that area.... I will not go for the cooking oil though. Well done!

Hi Jill, I am happy for and hope to be there one day. Did you have any burning when you first started using the olive oil? I tried coconut oil like the kind you cook with and it burned..I an pretty red everywhere...thx for any info you can share. I did order Hydromol off the internet...

I also got sensitive to coconut oil, and didn't like the smell either, even from the odourless stuff. Avocado oil has been my saviour, but will try olive oil next.

I just do not tolerate coconut oil....I am using lavander oil at the moment. Avocado oil I use with calendula matricaria essential oil, I hope it helps you. We need to alternate these oils from time to time...castor oil is good, too. I also use a estrogen cream called Estriol internally for my dry vagina which helps. I take natural supplements and vitamins...I have other two autoimmune diseases.

Hi Linda, only very very slight burning immediately after application but it soon eases. I’m away for the weekend with my partner and without sounding rude we have enjoyed  the time alone and had more than normal intimacy. I slapped the olive oil on immediately after each time and I’ve no soreness whatsoever. My olive oil is from Lloyd’s pharmacy in England.. made by a company called Samaritan and about £3.00.

Hi Jill, so happy you are able to enjoy life. I seem to be getting other problems...had bleeding when I wiped the other day and major pressure in my lower pelvic region...it rather hurts to go to the bathroom. I don't have a bladder infection...was tested. Went outside this morning for the first time to put just a few weeds from the landscaping, within about 10 mins or so I could feel some itching and later irritation. I did a warm soak applied the steroid and lubed up. I really think the Clobetasol is ripping up other parts of my system, especially the GI tract.... not sure if anyone else has had this type of reaction...a bit worried about it all.